GendeR And TubeRculosis - Stop TB Gender...They also organised the various interviews required and gave me a free hand in writing the report. I also received valuable feedback on the

The Gender Assessment Tool is one of three tools that forms part of the Communities,

Rights and Gender Assessments. This report presents the findings of the rapid assessment of

Gender and Tuberculosis (TB) conducted in India in 2017-18. The rapid assessment confirms

that TB affects different genders differently, affecting vulnerability to TB, its diagnosis, access

to treatment, adherence to treatment, the availability of supportive care and treatment

outcomes. The report also highlights issues linked to TB and pregnancy as well as the gendered

nature of nutrition in India.

ResouRce GRoup foR education and advocacy foR community HealtH 194, First Floor, Avvai Shanmugam Salai Lane, Off Lloyds Road, Royapettah, Chennai 600014, India

Phone: 044-65211047 / 28132099 | Email: [email protected] Website: www.reachtbnetwork.org | Facebook: @speakTB | Twitter: @speakTB co

mpu

prin

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A Rapid Assessment of GendeR And TubeRculosis

in india (2018)

A Rapid Assessment of GendeR And TubeRculosis

in india (2018)

This document is intended for circulation and may be freely reviewed, quoted or translated, in part

or in full, provided the source is acknowledged.

This report is, in part, made possible by the support of the American People through the United

States Agency for International Development (USAID).

2018 has been a milestone year for the TB response in India. In March 2018, the Honourable Prime

Minister reiterated India’s commitment to eliminate TB by 2025. India’s new National Strategic

Plan for 2017-25 reflects this commitment and lays out an ambitious road-map for the country to

implement a comprehensive response to TB.

I am pleased that India is one of the first countries to utilize the Communities, Rights and Gender

Tools developed by the Stop TB Partnership. This is in keeping with our efforts to engage civil society

and affected communities in the TB response through the creation of National, State and District

TB Forums and involving TB Champions or Kshay Veers at various levels. An increased focus on the

areas addressed by the CRG tools has the potential to not just increase case detection and treatment

outcomes but also improve the overall quality of care.

We know that TB affects an estimated three million women every year and remains among the top

five leading causes of death among adult women globally. Although more men are affected by TB,

women experience the disease differently, and gender disparities play a significant role in how men

and women access healthcare in the public and private sectors. Women also experience the impact

of stigma disproportionately.

The Gender Assessment of TB in India reveals the many gendered aspects of the disease including

the impact of gender on access to services, delays in diagnosis and treatment adherence. The report

also highlights issues linked to TB and pregnancy as well as the gendered nature of nutrition in India.

On behalf of the Central TB Division, I congratulate REACH on the publication of this document and

look forward to continuing our work with the TB community for a gender-sensitive response to TB.

Foreword

Message from Stop Tb PartnershipThe tuberculosis (TB) response needs a paradigm shift – to become people and community centered, gender sensitive and human rights based. There is a need for country specific data and strategic information on key, vulnerable and marginalized populations. There is a need to facilitate an enabling environment to effective prevention, diagnosis, treatment and care – which requires legal and gender related barriers to be analyzed, articulated and alleviated.

The Stop TB Partnership CRG Assessments are the tool for National TB Programmes to better understand and reach their epidemics. With TB being the leading cause of infectious disease deaths globally, and with over 10 million people developing TB each year, this disease continues to be a public health threat and a real major problem in the world. The Stop TB Partnership’s Global Plan to End TB and the World Health Organization (WHO) End TB Strategy link targets to the Sustainable Development Goals (SDGs) and serve as blueprints for countries to reduce the number of TB deaths by 95% by 2030 and cut new cases by 90% between 2015 and 2035 with a focus on reaching key and vulnerable populations. The Strategy and the Plan outline areas for meeting the targets in which addressing gender and human rights barriers and ensuring community and people centered approaches are central.

Ending the TB epidemic requires advocacy to achieve highly-committed leadership and well-coordinated and innovative collaborations between the government sector (inclusive of Community Health Worker programs), people affected by TB and civil society. Elevated commitment to ending TB begins with understanding human rights and gender-related barriers to accessing TB services, including TB-related stigma and discrimination. It has been widely proven that TB disproportionately affects the most economically disadvantaged communities. Equally, rights issues that affect TB prevention, treatment and care TB are deeply rooted in poverty. Poverty and low socioeconomic status as well as legal, structural and social barriers prevent universal access to quality TB prevention, diagnosis, treatment and care.

In order to advance a rights-based approach to TB prevention, care and support, the Stop TB Partnership developed tools to assess legal environments, gender and key population data, which have been rolled-out in thirteen countries. The findings and implications from these assessments will help governments make more effective TB responses and policy decisions as they gain new insights into their TB epidemic and draw out policy and program implications. This provides a strong basis for tailoring national TB responses carefully to the country’s epidemic – the starting point for ending discriminatory practices and improving respect for fundamental human rights for all to access quality TB prevention, treatment, care and support services. The development of these tools could

not be more timely, and the implementation of these tools must be a priority of all TB programmes.

Dr. Lucica Ditiu,Executive Director, Stop TB Partnership

No.194, 1st Floor, Avvaishanmugam Salai Lane, Llyods Road, Royapettah, Chennai – 600 014.E-mail: [email protected] | Phone: 044 – 65211047 / 28132099

ResouRce GRoup foR education and advocacy foR community HealtH

PrefaceThe TB response is continually evolving. In the last few years, we’ve seen new diagnostic tools, new

algorithms to reduce delays in diagnosis, breakthrough research on latent TB and TB infection, new

social welfare schemes to support those affected by TB and even two new drugs to treat TB. We’ve

also seen, for the first time, the language of rights and equity enter the TB discourse.

Today, I am delighted to see that globally and in India, we are talking about adopting a rights-based

approach to TB. Since REACH’s inception almost two decades ago, we have tried to adopt a patient-

centric approach in our response to TB. Over the last 19 years, working closely with those affected by

TB and their families, we have witnessed and tried to address the many vulnerabilities that impact

their health. We have been part of nascent discussions on issues affecting treatment literacy and the

rights of affected communities.

I am grateful that REACH has had the opportunity to be part of this important conversation in

India, by undertaking the Communities, Rights and Gender Assessments. The CRG assessments has

given us an opportunity to study these vulnerabilities through a more structured framework and

to contribute to the discussions on data collection and measurement. It has been a steep learning

curve for us and allowed us to reflect on our own work, challenge ourselves and push ourselves

to do better. I am thankful to the Stop TB Partnership for giving us this opportunity and for the

leadership at the Central TB Division and the Ministry of Health and Family Welfare for welcoming

these conversations.

I hope that the TB community in India will find the findings of these assessments useful and

interesting, and that we can work together to translate the recommendations into concrete actions

that will strengthen the TB response in this country. We look forward to your feedback and continued

partnership.

dr. nalini KrishnanDirector, REACH

9 | A Rapid Assessment of Gender and Tuberculosis

Acknowledgements

Report authored by Amita Pitre

Funding Support: The Stop TB Partnership

This report is, in part, made possible by the support of the American People through the United

States Agency for International Development (USAID).

REACH gratefully acknowledges the support and guidance of the Central TB Division and senior

officials at the Ministry of Health and Family Welfare, Govt. of India, as well as all State and District

TB Officials and community representatives who supported this process. We especially acknowledge

members of the Expert Advisory Group who provided invaluable inputs at different stages of this

assessment. We also thank colleagues at the Stop TB Partnership for their support and advice.

Finally, our thanks to Dr Jaya Shreedhar who reviewed and edited the final version of this report.

Acknowledgements from the Author

I would like to thank all the participants of this Rapid Assessment who shared their experiences,

observations and insights with me. This includes all the TB survivors and their relatives, TB experts,

senior officials of the Central Tuberculosis Division (CTD), managers of the state and district level

Revised National Tuberculosis Control Program (RNTCP), field functionaries of the RNTCP and

National Health Mission (NHM), civil society organisations and members, members of ‘Touched by

TB’, representatives of the transgender community and sexual minorities, social scientists and health

researchers. This study would not have been possible without their valuable inputs and contribution.

I would also like to acknowledge and thank the Stop TB Partnership for providing the Community

Rights and Gender Tools which served as the guiding framework for the Rapid Assessment. I join

REACH in thanking the Stop TB Partnership for financially supporting this study.

Thanks also to the REACH (Resource Group for Education and Advocacy for Community Health) team

- especially Dr Ramya Ananthakrishnan, Executive Director, and Anupama Srinivasan, Deputy Project

Director, TB Call to Action, REACH, who conceptualised the Rapid Assessment and facilitated the

process at every step. They also organised the various interviews required and gave me a free hand

in writing the report. I also received valuable feedback on the first draft of the report. Thank you to


the Delhi REACH team, especially Ms. Smrity Kumar, Project Director, TB Call to Action, for facilitating

interviews in Delhi and Maharashtra and Debjyoti Mohapatra of REACH, Odisha, for facilitating

interviews in Odisha. The REACH team in Odisha was instrumental in helping with the logistics for

the study in Odisha.

A special thanks to Prabha Mahesh for her extensive help in arranging interviews with various

stakeholders in Mumbai and Maharashtra.

I appreciate the valuable feedback given on this report by Dr Sundari Mase, WHO; Dr Anuradha

Rajivan; Prof. Bilkis Vissandjee, Faculty of Nursing, Public Health Research Institute, University of

Montreal, Canada; Prof. Rama Baru, Professor, Centre of Social Medicine and Community Health,

JNU, Delhi; Ms Blessina Kumar, CEO, Global Coalition of TB Activists and Mr. Dean Lewis, TB Activist

and Touched by TB members; and Ms Prabha Mahesh, Touched by TB. The report has been enriched

with their inputs.

I am grateful to Prof. Bilkis Vissandjee and Prof. Lakshmi Lingam, School of Media and Cultural

Studies, Tata Institute of Social Sciences, Mumbai who deserve a special mention for sharing

the literature they had collected while working on a systematic literature review of ‘Gender and TB’

in South Asia. Thanks also to Dr. Muniyandi, Scientist C, from the National Institute for Research in

Tuberculosis, who supported the first level of literature review.

I would also like to thank Jai Wadia-Madan who assisted in editing this paper.


Glossary

ACF Active Case Finding

ASHA Accredited Social Health Activist

CB-NAAT Cartridge Based Nucleic Acid Amplification Test

CDR Case Detection Rate

DBT Direct Benefit Transfer

DMC Designated Microscopy Center

DOTS Directly Observed Treatment Short Course

DTC District Tuberculosis Center

DTO District TB Officer

EPTB Extra Pulmonary TB

FNAC Fine Needle Aspiration Cytology

PWID/ PUD IDU PWID People who inject drugs or PUD People who use drugs. Formerly referred to as Intravenous Drug Users

LTBI Latent TB Infection

MDR Multi-drug-resistant TB

MO Medical Officer

NACP National AIDS Control Programme

NFHS-2 National Family Health Survey – 2

NHM National Health Mission

NSP New Sputum Positive

NSN New Sputum Negative

NEP New Extra Pulmonary

OBC Other Backward Classes

OTC Over-the-counter

PAF Population Attribution Fraction


PDS Public Distribution System

PHC Primary Health Center

PPM Public-private Partnership Management

RNTCP Revised National Tuberculosis Control Program

SC Scheduled Castes

ST Scheduled Tribes

STO State TB Officer

STS Senior Treatment Supervisors

TB Tuberculosis

TISS Tata Institute of Social Sciences

WHO World Health Organization

XDR Extremely drug-resistant TB


Communities, Rights and Gender Tools

The Communities, Rights and Gender (CRG) Tools were developed by the Stop TB Partnership in consultation with various partner and donor organisations. The CRG tools provide a guiding framework for undertaking rapid assessments of three different dimensions of our response to TB

– gender; key and priority populations; and law and human rights. An increased focus on these

aspects has the potential to not just increase case detection and improve treatment outcomes but

also improve the overall quality of care available to those affected by TB.

The three tools that form part of the CRG initiative are:

1. Data for Action Framework for Key Populations, which focuses on measuring the burden of TB

among key, vulnerable and priority populations in the country

2. Gender Assessment tool for national TB response, which applies a gender lens to TB in the

country and assess ways in which gender affects and interacts with TB

3. Legal Environment Assessment Tool that looks to understand and examine the legal environment

for TB through a rights-based framework

In 2017, the Stop TB Partnership hosted a workshop for partners from six countries including India,

which would be the first to utilize the CRG tools.

India’s National Strategic Plan (NSP) for 2017-25, recently formulated by the Ministry of Health and

Family Welfare, Government of India, lays out an ambitious road-map for the country to achieve TB

elimination by 2025. The new NSP is a sign of renewed political commitment to the fight against TB

in India and this is therefore an opportune time to introduce the Communities, Rights and Gender

Tools. Each of these three tools provide an opportunity to reflect on a person-centred and rights

based approach to TB.


cRG Assessments Timeline in india

July 2017: REACH Participation in CRG Workshop in Thailand

Sep – Oct 2017: Preparatory discussions for rollout of CRG tools in India

October 2017: Constitution of Expert Advisory Group

November 2017: Consultative Meeting of Expert Advisory Group

December – March 2018: Assessments underway

April – August 2018: Feedback and revision of assessment reports

September 2018: Final consultative meeting and publication of assessment reports

Expert Advisory Group Members

• Mr Arun Kumar Jha, Economic Advisor, Ministry of Health & Family Welfare, Govt. of India

• Dr Kuldeep Singh Sachdeva, DDG-TB, Central TB Division, Ministry of Health & Family Welfare, Govt. of India

• Dr Sunil Khaparde, former DDG-TB, Central TB Division, Ministry of Health & Family Welfare, Govt. of India

• Dr. Sundari Mase, WHO Country Office, India

• Ms Blessina Kumar, CEO, Global Coalition of TB Activists

• Dr Sarabjit Chaddha, Deputy Regional Director, The Union South-East Asia Office

• Mr Subrat Mohanty, Sr. Manager - Project Coordination, The Union South-East Asia Office

• Dr Rama Baru, Professor, Centre of Social Medicine and Community Health, Jawaharlal Nehru University, New Delhi

• Dr Anuradha Rajivan, Former Advisor, Asian Development Bank, Strategic and Policy Department

• Dr Srinath Satyanarayana, Deputy Director (Research), Center for Operational Research, International Union Against TB and Lung Disease (The Union)

• Dr Beena Thomas, Department of Social and Behavioral Research, National Institute for Research in Tuberculosis

• Mr. Brian Citro, Assistant Clinical Professor of Law, Bluhm Legal Clinic, Northwestern Pritzker School of Law


Contents

List of Tables ........................................................................................................................... 16

Executive Summary ................................................................................................................ 17

I. Introduction ............................................................................................................... 26

II. Objectives of the Gender Assessment ........................................................................ 28

III. Methodology.............................................................................................................. 28

IV. Gender and Epidemiology of TB in India .................................................................... 36

4.1 Incidence of TB among women and girls ........................................................... 36

4.2 Epidemiological Picture of TB Based on Literature Review ................................ 37

4.3 Age and Sex-linked Incidence of TB from RNTCP Data ....................................... 38

4.4 TB during pregnancy and post-partum period ................................................... 40

4.5 Infertility on account of Tuberculosis ................................................................. 45

V. Gender and Access to Health Care in TB .................................................................... 50

5.1 Physical and Health System Barriers to Access Care .......................................... 52

5.2 Barriers Associated with Rigid Gender Roles ..................................................... 53

5.3 Delays in Diagnosis of TB and Neglect ............................................................... 54

5.4 Stigma and Discrimination ................................................................................. 57

VI. Gender Barriers Faced by Men ................................................................................... 61

VII. Gender and Nutrition in TB ........................................................................................ 65

VIII. Conclusion .................................................................................................................. 69


List of Tables

Table 1 Gender Analysis/Assessment Matrix for Health Programs

Table 2 From Gender Blind to Gender Transformative Health Programs

Table 3 Details of interview respondents

Table 4 Age and Sex wise New Sputum Positive (NSP) cases in Maharashtra (2016)

Table 5 TB cases in Maharashtra by category (2016)

Table 6 Conceptual Mapping of Gender Delays in Health Care Seeking

Annexure 1 State-wise distribution of respondents

Annexure 2 District-wise New Sputum Positive Cases in Mumbai, 2016


Executive Summary

Women and girls account for over a million cases of Tuberculosis in India each year. In 2016, about 40% of the 2.79 million new cases of TB in India were among women. TB is also the fifth leading cause of death among women in the country, ahead of maternal deaths.

India is the highest contributor of new TB cases, TB deaths and Multi-Drug Resistant (MDR) TB cases

to the global TB burden each year and the country has accorded top priority to eliminating TB.

Evidence from elsewhere shows that gender is a significant influencer of the distribution and impact

of TB in communities. A gendered approach to TB prevention and care in India’s National Strategic

Plan for TB Control (2017-2025) which may be implemented by the Revised National Tuberculosis

Control Program (RNTCP) is a felt need. However, a gender analysis of the epidemic is yet to be

incorporated into India’s response to TB.

This first rapid assessment of gender and TB in India -- which includes an extensive review of literature

primarily from India, as well as 70 interviews with various stakeholders of the RNTCP -- shows that

TB affects different genders differently. Gender affects susceptibility to TB, its diagnosis, access to

treatment, adherence to treatment, the availability of supportive care and treatment outcomes. The

findings raise significant concerns and queries that merit further investigation and show that the

application of a gender lens can lead strengthen strategies towards eliminating TB in India.

Key Findings

1. TB data collection

A clearer epidemiological picture of TB in India stratified by age and sex is needed and may be partly

achieved by improving the notification of TB cases from the private sector. Age and sex-disaggregated

TB data from public and private health sectors needs to be collected each year to obtain time-trends

in TB epidemiology, and such data needs to continually inform program strategies for men, women

and transgender people at the national, state and district levels.

2. TB diagnosis

There is a growing body of evidence that women may be diagnosed late or not diagnosed at all;

that TB presents differently among women, making diagnosis among them more difficult; that

there are various socio-cultural barriers which hamper women’s access to diagnostic facilities; that


women may be at added risk of the disease in certain stages of their lives and on account of their

role as caregivers in the family. The RNTCP has largely concentrated on identifying and treating the

infectious form of TB namely sputum positive pulmonary TB and the diagnosis of Sputum negative

and Extra-Pulmonary cases of TB (EPTB) is often missed. In recent times, more girls and women

are being diagnosed with TB due to increased access to healthcare and the deployment of newer

diagnostic technologies like CBNAAT. TB among children remains under-diagnosed again due to the

different presentation of TB in this age group and the challenges in diagnosis. Detecting all forms of

TB, particularly among women, is necessary to progress towards the targets of the End TB Strategy.

3.Risk factors for TB

Malnutrition substantially increases risk of TB disease in women and results in poorer outcomes

mostly related to poorer adherence to treatment. Over half of all women in the country are anaemic

and one in five are underweight. Recognizing that adherence can be improved by nutritional support,

the National Health Mission has approved supplementary nutrition for those affected by TB.

Diabetes, a significant risk factor for developing TB disease affects about 6% of women in India.

For most women, the first indication that they may develop diabetes in later life is when they are

diagnosed with gestational diabetes. A window of opportunity exists in the national program to

counsel and track such women.

About 40% of those with HIV in India are women and many of them go on to develop TB. Cross

referrals between the National AIDS Control Program and the RNTCP need to be strengthened to

ensure care for women who have both HIV and TB.

Men face a higher risk of developing TB disease than women due to risk factors such as smoking and

intravenous drug use that are more common among males. Women are exposed to high levels of

indoor pollution from wood-stoves and women who smoke, a good proportion of whom are in the

North Eastern states, also require awareness and counselling. Alcohol dependence is a leading cause

of non-adherence to TB treatment among men and is associated with poor treatment outcomes. The

existing monitoring capacity of RNTCP needs to be strengthened to support and ensure treatment

among TB patients – both men and women - who are alcohol or drug dependent.

4.Social determinants of TB

Women delay seeking care for ailments because of a high burden of household work combined with

the deprivation of health literacy, mobility, access to resources and decision-making powers. We found

a high level of stigma associated with a TB diagnosis among both unmarried and married women.

Unmarried women were anxious that they might not get married if they had TB. Consequently,

families hid the diagnosis, marrying off the women and later sending them to a relative’s home to

begin treatment. The women were forced to continue TB treatment clandestinely after marriage.

For already married women, the fear of being divorced or being sent back to their natal family is an

obstacle to accepting TB diagnosis and treatment. The constant struggle and priority for women and


their families is to get married and stay married rather than get diagnosed, start TB treatment and

adhere to it until cured. These factors considerably influence TB case detection and adherence to

treatment, and need to be addressed.

In contrast, men suffered less from TB related stigma and discrimination. Men diagnosed with TB

are generally accepted and cared for by their families, especially their wives, even in the face of

misconceptions linked to TB disease. Women, on the other hand, often face harassment at home,

are begrudged nutritious food and may be sent to the natal home to recover from the illness and

may, therefore, face worse treatment outcomes.

Men often delay taking time away from work to seek health care for fear of losing income. Some

feel a sense of shame for not being able to fulfil the traditional role of the provider for the family

when they are too sick to work. Men also face frequent disruptions in treatment because of having

to migrate in search of work.

Overall, there is better adherence to TB treatment, better overall outcomes and lower incidence of

MDR-TB among women. However, men face challenges in these domains. More research is required

to understand both these phenomena.

5.Marginalized minorities

Transgender people and sex-workers are examples of stigmatized and marginalised minorities who

need to be incorporated into the public health system. They are habitually viewed as stakeholders in

HIV prevention and care, and TB among these communities is diagnosed and treated almost entirely

in the narrow context of HIV-TB co-infection. Given that these groups face barriers in accessing

health care generally, effort needs to be taken to ensure the timely detection and treatment of TB

among them - and in a way that respects their right to dignity.

6.Tribal communities

Reaching health care facilities for TB diagnosis and treatment is challenging for tribal communities,

particularly in hilly terrains, due to inadequate means of transportation. Some District Tuberculosis

Centers (DTCs) are located far from the communities; free X-rays are sometimes unavailable at the

sub-district level. Inadequate facilities to collect and transport sputum - partly due to the erratic

availability of lab technicians - are specific concerns for the RNTCP in tribal areas. These barriers

together with widespread malnutrition affect both women and men and have resulted in a high

prevalence of TB combined with lower case detection rates in many tribal areas. Scheduled Tribe

(ST) women are the worst affected.

7.Health systems

The lack of a patient-centric orientation, inadequate facilities and staff shortages pose stiff challenges

to the functioning of the health system. Chief among these is the lack of women staff, evidenced by

the huge number of unfilled positions of field supervisory staff (STS, DOTS and DOTS Plus supervisors)


who have substantial interactions with TB patients. The scarcity of women-friendly services also

feeds the misconception that TB is a ‘man’s’ disease. ASHAs from the National Health Mission are

increasingly taking on the role of treatment supporters providers, but there is also a need for male

field-based staff and volunteers to provide DOTS. The National Health Mission supervisory staff are

mostly male and the field staff, namely ASHAs mostly female, a model that does not bode well for

progress towards gender-equal services.

Community members experience several barriers to accessing care. These include mandatory daily

visits to the DTC for DOTS, their fears of being stigmatized by neighbours following home visits by

RNTCP staff, lack of information about TB, inadequate or absent counselling, confidentiality and the

poor attitudes of health staff. Some of these issues are attributable to the fact that the RNTCP has

yet to recruit counsellors and the existing staff handle a very high workload. Community members

also said that multiple visits were required before TB diagnosis was confirmed, that they faced

difficulties in getting appropriate referrals and were rarely guided in negotiating care in medical

college hospitals. These findings are complemented by literature showing that TB diagnosis is often

delayed from 1 to 2 months. During this phase the patient continues to be symptomatic and might

transmit TB. The RNTCP has a stated goal of integrating with the National Health Mission and much

needs to be done in this direction to deliver significant results.

While the State Tuberculosis Officers (STOs), District Tuberculosis Officers (DTOs) and City Tuberculosis

Officers (CTOs) are highly motivated thanks to high-level political commitment to the RNTCP, they

remain poorly paid and shoulder multiple responsibilities in addition to administering TB services. A

similar factor which cannot but affect services, is that almost all RNTCP staff other than STOs, DTOs

and CTOs, are contract employees who are poorly paid compared to other health system employees.

The impact of existing gendered interventions

MDR-TB counsellors employed on a project basis by TISS (Tata Institute of Social Sciences) and MSF

(Medecins Sans Frontieres) have helped women patients deal with adverse drug reactions and

navigate personal problems of various kinds. Such counsellors are required in the RNTCP to support

Drug-Susceptible Tuberculosis (DST) and DR-TB cases because both face complex challenges with

adherence and side effects. Other examples of model projects suitable for scale-up are the provision

of nutritional support to TB patients by REACH in Chennai, the deployment of X-ray equipped mobile

vans in tribal areas and transit homes such as the Sahara Aalhad home in Pune for near-destitute TB

and HIV-TB patients. Gender sensitive schemes outside the health sector such as Ujwala have helped

reduce women’s risk of TB by reducing indoor pollution.


Recommendations for the RNTCP

We recommend that RNTCP develop and adopt a Gender and TB policy and inculcate a gendered

approach to TB prevention and care which would include:

1. Developing a better understanding of the age and sex disaggregated epidemiological picture of TB in India

2. Developing a patient-centric and gender-sensitive approach to TB

3. Developing a gender-response Operations and Implementation Research Agenda for the RNTCP program as well as for those Private Health Services that provide TB care

1. Develop a better understanding of the age and sex disaggregated epidemiological picture of TB in India:

• Publish age and sex disaggregated RNTCP data at national, state and districts levels. This is achievable with NIKSHAY (a web based notification system for TB) data.

• Build a knowledge base of epidemiology, presentation and outcomes of TB among wom-en and children, so that TB among them may be appropriately addressed. TB surveys may

be gender-sensitively designed to gather such information.

• Encourage and incentivise research to cover sputum negative forms of pulmonary TB as well as extra-pulmonary TB, with the findings analysed by age and sex.

• Analyse historical age and sex disaggregated RNTCP data to understand the time-trends in epidemiology.

• Publish age and sex-disaggregated data for Active Case Finding (ACF) measures.

• Institute a ‘TB in Pregnancy’ register to document, monitor and track outcomes for TB and HIV-TB among pregnant and post-partum women.

2. Develop a patient-centric and gender sensitive approach to TB

Increase awareness about Tuberculosis

• Conduct awareness campaigns about pulmonary and extra-pulmonary TB, signs and symptoms, modes of transmission, curability and the importance of early diagnosis and

complete treatment.

• Adopt Behaviour Change Communication strategies that specifically aim to correct mis-conceptions about TB and its transmission and curability to help remove the TB stigma

and discrimination especially among women.

• Increase awareness of the high susceptibility to TB for smokers, drug and alcohol de-pendent persons, pregnant and post-partum women, and underweight and undernour-

ished persons.


Improve responsiveness of health services

• Increase awareness about the gender dimensions of TB among medical professionals and the staff of the RNTCP.

• Build capacity (knowledge, attitudes and practices) of all RNTCP staff to provide respect-ful, patient friendly, gender sensitive and gender responsive services.

• Improve measures for confidentiality and privacy in the health system.

• Improve measures for building confidence of health staff and foster respect for all pa-tients including transgender persons, sex workers, those dependent on drugs and alcohol

and any other marginalized groups.

• Track the pathways of patients’ access to diagnosis and treatment as part of regular mon-itoring. This would help curtail unnecessary visits and improve the efficiency of access to

health services.

• Recognise smokers and persons dependent on alcohol and drugs, as key populations for TB and devise supportive measures to not only create awareness about the risks of TB

within this group but also to enable them to access diagnoses, comply with treatment

and undergo de-addiction.

• Recognise pregnant and post-partum women and undernourished persons as key popu-lation at risk of TB.

• Prioritise transgender persons and sex-workers as those at risk of TB beyond their risk for HIV-TB. Enlist the support of TB Champions and HIV-TB Champions from within the

community, TB activists and NGOs to reach them.

• Consider supplementary nutrition and/or added supplies (ration) through the Public Dis-tribution Services rather than through the RNTCP, not only for TB patients but also for

their families.

• Advocate for compensation of the wages that TB patients lose while on leave during the intensive phase of treatment.

Increase support for TB patients closer to the community

• Build support groups for TB patients, particularly women with TB, and those dependent on alcohol or drugs with the help of NGOs and TB activists.

• Honour TB champions and TB activists at the community level and call for participatory meetings with TB survivors to understand how to make the program gender and patient

sensitive to reduce TB stigma.

• Provide budgets for participation of voluntary organisations in outreach and support for TB patients. Voluntary organisations are adept at tailoring their services for the needs

and rights of local communities as also for awareness generation.


Improve staffing of RNTCP to effectively respond to TB

• Recruit more women and transgender people to make the RNTCP an equal opportunities employer

• Engage male and transgender DOTS providers at the ground level in cities and villages, alongside women providers.

• Ensure provision for counsellors and psychosocial support for all TB patients including DS-TB.

Improve reach of the health system and facilities in the health system

• Employ active measures to reach primary health services to people and through these increase case detection of TB while ensuring the confidentiality and privacy of the sus-

pected patients. Dedicate an adequate budget for the same.

• Review the current format of Active Case Finding (ACF). Also conduct regular health camps for general ailments close to communities, especially for communities with poor

access- either financial or physical or social, as a mechanism to reach patients.

• Allocate a budget for involving NGOs and civil society to sustain awareness of TB in the community and to create TB champions in the community.

• Provide budgets for mobile medical clinics/vans and health camps in tribal areas includ-ing hard-to-reach rural areas of all districts.

• Provide free X-ray facilities (including mobile x-ray units in difficult areas) at Primary Health Centres, especially in tribal areas.

• Increase access to CBNAAT diagnostic machines.

3. Develop a patient-centric, gender sensitive operations and intervention research agenda to understand…

• Patient pathways to health services, access to diagnosis and care and delays in care by age and gender

• Quality of care and perceptions of quality of care given by the RNTCP program and the private sector

• Difficulties faced by patients in accessing care, continuity of care, and collect feedback on experiences with the health system

• Reasons for loss to follow up, discontinuation of treatment, relapse and poor outcomes

• Experiences of women, men, transgender persons, sex workers, drug users, migrants, smokers and those who are alcohol dependent with the health system


• Reasons to opt for public sector or private sector or AYUSH providers or informal care

• Research studies to understand the comparative impact of supplementary nutrition in various forms (eg food supplies, conditional cash transfers etc) on TB treatment and out-

come

Recommendations for the Health System beyond the RNTCP

• Improve the integration of the RNTCP with the National Health Mission and Reproductive and Child Health programme, especially the Maternal Health Services.

• Increase health budgets and strengthen the health system overall, especially in tribal areas.

• Incentivise medical officers and staff to work in a sustained fashion in tribal and diffi-cult-to-reach areas; recruit local persons as far as possible.

• Tackle under-nutrition at the population and family level.

Recommendations for Civil Society and Voluntary Organisations

• Generate awareness about TB, especially among the most marginalised communities.

• Undertake innovations in program strategies, for instance, to increase adherence to treatment and reduce TB related within the community. Such innovations may be under-

taken in collaboration with the RNTCP and the successful innovations upscaled.

• Foster community based support groups for TB patients, especially women patients, those dependent on alcohol, drugs or tobacco, thus also nurturing TB champions in the

community who may include TB survivors.

• Support transgenders, sex-workers and other gender and sexuality minorities in access-ing care and help them become active advocates for their cause.

• Carry out studies on socio-cultural and gender aspects of Tuberculosis to understand how best TB can be addressed in the community. RNTCP would be able to take the learn-

ings to improve programme delivery.

Recommendations for the ICMR and the ICSSR

• Institute guidelines for gender sensitive and gender responsive research studies which will ensure gender equality in research in following ways

o Choice of research topics needs to address existing gaps in knowledge also from a

gender and socio-cultural perspective.

o Quantitative studies need to be designed to collect and analyse data in an age and sex

disaggregated manner.


o Adopt a policy of presumed inclusion of pregnant and post-partum women in clinical

trials and document with reasons where exceptions are required. Also include them

in epidemiological and operations research.

o Ensure the informed participation of women, men, transgender persons, sex workers

and children and include their perspectives in research studies.

• Incentivise and encourage research where there are gaps in knowledge about epidemiology, presentation, access to health care and other aspects of illnesses especially for women, chil-

dren, transgender persons, sexual minorities and others marginalised on the basis of their

sexuality such as sex workers

• Ensure that constituencies such as pregnant and lactating women and women patients are included in all forms of research including clinical trials where no specific harm is expected

on account of the research, so safety, tolerability and response to existing and new drugs is

known, knowledge about side effects, difficulties with adherence and experiences with the

health system are garnered.


I. Introduction

1.1 background and concepts

Women account for three million of the estimated seven million people affected by Tuberculosis

(TB) every year1. TB remains among the top five leading causes of death among adult women glob-

ally. Although more men are affected by TB, women experience the disease differently, and gender

disparities play a significant role in how men and women access healthcare in the public and private

sectors. Even so, little is known globally and in India about the different biological and social factors

that affect the incidence, disease manifestation, progression and health seeking behavior of persons

suffering from TB, their response to treatment and treatment outcomes.

In India, the incidence of TB in 2016 was 2.76 million, with women accounting for 40% of the new

cases2. The male to female ratio for TB stood between 1.07 to 2.25 in 2016. There is evidence of male

to female ratios of persons suffering from TB varying between 30 to 40% from across the world3. This

suggests that the differences in incidence of TB may be due to more than biological differences, and

that significant social factors such as exposure to the infection and access to health care are at play

too. The substantial gap in TB incidence between men and women could also be due to under-re-

porting of the disease among women. Qualitative studies and interactions with program managers

and patient advocates brought up a range of issues including stigma, barriers to access health ser-

vices and neglect of the disease among populations who do not conform to society’s gender norms.

1.1 The Gender Assessment Tool by The stop Tb Partnership and unAids

This assessment uses the guiding framework provided by UNAIDS and the Stop TB Partnership for a

rapid gender assessment of the TB Epidemic and response in India4. The tool seeks to move the HIV

and TB response along the continuum of gender-blind to gender-sensitive, and ultimately to gender

transformative.

The concept of Gender

Indian society, like most, is a deeply patriarchal society. Patriarchy literally means ‘rule of the father’.

1 TB in India Annual Report 20172 TB in India Annual Report 20173 Weiss, Auer et al, 20064 “Gender_Assessment_Tool_TB_HIV_UNAIDS_FINAL_2016 ENG.Pdf”


It not only privileges men over women and other genders, but it institutes and institutionalizes a va-

riety of hierarchies in society. Men, women and other genders are not homogenous groups, but di-

vided across structures of class, caste, ethnicity, religion, sexuality and gender. Access to health care

differs by rural and urban locations and this adds another layer to the hierarchy. Understanding the

impact of gender on health and more specifically on TB calls for a nuanced understanding of gender

as embedded in other social orders. Society harnesses the concept of gender as it does other rigid

codes prescribed by caste and religion to maintain these hierarchies.

Gender and sex are two distinct concepts. Sex indicates a biological category (male, female or in-

tersex) based on characteristics such as external and internal genitalia, the chromosomal makeup

(22 XY-male and 22 XX-female) of the person and levels of male and female hormones in the body.

Gender, on the other hand, is a social construct and defined as “a socially constructed set of norms,

roles, behaviors, activities and attributes that a given society considers appropriate for women and

men, with the inclusion of people who identify themselves as transgender…Gender based prejudice

includes any kind of stigma, discrimination, or violence against somebody because of their gender,

gender identity or their sexual orientation.”5

Whether babies are born as male, female or intersex, genderization shapes them to act in con-

ventionally masculine or feminine ways. Patriarchal societies are organized along lines of gender,

where society prescribes dress codes, roles and responsibilities, the division of labor and the value

to be placed on the lives of boys and girls, men and women. Relations of power characterize gender

relations in society where girls and women and their work are often valued less than that of men.

Both men and women are entrapped into rigid gender roles that are acceptable to prevailing soci-

etal norms. For example, men are overwhelmingly viewed as breadwinners and a man is awarded

respect or denied it based on the extent to which he is able to fulfill this role. Similarly, bearing chil-

dren is considered a woman’s gendered obligation to family and society. Women are taunted and

harassed for not bearing children.

The principal impact of gender power differentials in society has, thus far, been the creation and

maintenance of hierarchical relationships that disproportionately favour men and adversely impact

women and intersex people --who are then dubbed as the ‘weaker’ sexes. Overall, the prevailing

gender power differentials are disadvantageous for women and intersex people and lead to the dep-

rivation of nutrition, education, decision-making power, resources and mobility.

The problem with a rigid gender identity is that all those who do not conform to the binary gender

identity prescribed by society are ridiculed, harassed and sometimes forced out of society. Transgen-

der communities such as Hijras, for example, are forced to live as outcasts. They are largely deprived

of education, decent housing, access to health care and dignity. Homosexuals and sex workers too

suffer discrimination, including criminalization, as they do not conform to the expectations of soci-

ety.

5 Gender Assessment tool by UNAIDS/Stop TB Partnership


Gendering does not operate in isolation; the process meshes with other axes of power such as eth-

nicity, class, caste and location to create differential access to resources and lead to differential out-

comes in well-being. For example, one’s gender affects susceptibility to TB as well as one’s response

related behaviours such as seeking health care.

Gender and sexuality-based discrimination is a barrier to TB detection and care. This rapid assess-

ment includes an enquiry into how the gender and sexual identities of persons affect case finding

and health care access to TB, and identifies practical recommendations and doable action for a more

gender responsive service, as a step towards the ultimate goal of control and elimination of TB in

India.

For purposes of this report the term ‘Gender Assessment’ is being used synonymously with the

term ‘Gender Analysis’ in the context of health issues and programs. The concept of application of

a gender lens to understand how gender interacts with any phenomenon such as a health problem

was first conceptually developed in the form of a ‘Gender Analysis’.

II. Objectives of the Gender Assessment • To understand the gender dimensions of the TB burden and response in India, including the

impact on men, women and transgender persons as also among sexual minorities.

• To undertake an analysis of available sex-disaggregated data on TB and propose steps to ensure future cross-cutting availability of sex-disaggregated data.

• To understand the gender responsiveness of the national TB programme, in terms of both policy and practice.

• To outline key recommendations for India to move towards a gender-sensitive response to TB.

III. MethodologyThe Conceptual Framework of Gender Analysis of a Health Program

As per WHO (Gender Mainstreaming for Health Managers: A Practical Approach, 2011), a gender

assessment/analysis in health identifies, assesses and informs actions to address inequality that

stems from:

• Gender norms, roles and relations

• Unequal power relations between and among men and women

• Interaction of contextual factors with gender, such as location, ethnicity, education or employment status, sexual orientation

A gender assessment contributes to understanding health differences and disparities among and

between women, men and other genders in the following areas:


• Risk factors and vulnerability.

• Patterns of disease, illness and mortality.

• Health effects of policies, legislations and programs (e.g. OPD care for TB is not covered under Health Insurance).

• Access to health care.

• Decision making processes.

A Gender Assessment can increase effectiveness of the program by…

• Ensuring the right to health of different groups of men and women;

• Recognizing and reducing the constraints women and girls face in protecting and promoting their health;

• Considering and addressing how male gender norms, roles and relations may harm the health of men and boys;

• Reducing inappropriate, ineffective services, programs or policies that ignore the realities of women’s and men’s health needs and living conditions;

• Identifying and reducing gender bias in the health system;

• Developing and implementing gender-responsive policies, laws and services (primary, second-ary and tertiary) and programs; and

• Improving health information, documentation and use.

The following matrix presents various factors that influence health outcomes. Each gender related

consideration may be assessed against each health-related consideration to identify the intersections

between gender and health.


Table 1: Gender Analysis/Assessment Matrix for Health Programs

Factors that influence health

outcomes: Health-related

considerations

Factors that influence health outcomes:

Gender-related considerations

biological factorssociocultural

factors

Access to and control

over resources

Risk factors and vulnerability

Access and use of health

services

Health-seeking behavior

Treatment options

experiences in health care

settings

Health and social outcomes

and consequences

Source: WHO, 2011

A gender assessment of TB is the first step in moving country level TB programs from being gender-

blind to gender-sensitive to gender-transformative. These concepts are captured in the table below.

Table 2: From Gender Blind to Gender Transformative Health Programs

Type of Intervention

impact example

Gender-negative or gender-blind

Fails to acknowledge the different needs or realities of women and men and transgender people. Aggravates or reinforces existing gender inequalities and norms.

Lack of disaggregated TB data because of a failure to acknowledge that programs and policies have different effects on women, men and transgender people.

Gender-sensitive or gender- responsive

Recognizes the distinct roles and contributions of different people based on their gender; takes these differences into account and attempts to ensure that women, men and transgender people equitably benefit from the intervention.

DMC operational hours are changed to suit the convenience of working men and women.

Gender- transformative

Explicitly seeks to redefine and transform gender norms and relationships to redress existing inequalities.

Challenges and changes power norms in order to strengthen women’s ability to seek TB diagnosis and treatment without fear of stigma

Source: UNDP, 2014


Methodology for the current Gender Assessment

The methodology followed for the rapid assessment was a review of literature available from sec-

ondary sources and interviews with various stakeholders in the field of TB.

Literature Review

There is a wide range of literature that explores gender issues in TB, sex-wise epidemiology of TB,

how TB affects women, socio-cultural aspects of TB, community responsiveness and gender respon-

siveness of TB programs, access to health care with a community and gender perspective and the

impact of TB on the health of women and marginalized groups. We reviewed research, policy and

program related reports from governmental and non- governmental sources, peer reviewed jour-

nals and UN publications, keeping the above-mentioned themes in focus and concentrated on those

specifically pertaining to India. Some important papers studying global and South Asian evidence

were also reviewed.

For this purpose, a key word search was undertaken using the key words ‘tuberculosis’ and ‘gender’

and ‘India’ starting from the year 1990 till date. The database covered was PubMed. 108 papers

were downloaded and the abstracts studied using these criteria. At the same time other sources

of reports and policy papers were researched mostly through papers suggested by TB and public

health experts whom we interviewed, including a database generated by an Indo-Canadian research

initiative on ‘Gender and TB’ by Prof. Bilkis Vissandjee of Montreal University and Prof. Lakshmi

Lingam of Tata Institute of Social Sciences. A further short-listing of papers was done based on their

specific substantial contributions made to the understanding of gender and TB and these papers

have been analyzed to inform this report.

Interviews with Stakeholders

We interviewed the following stakeholders in three states, viz., Odisha, Maharashtra and Delhi:

• State TB Officers (STOs) and Central TB Division Officers (CTOs).

• District TB Officers and the program managers in their teams.

• Field-level functionaries namely Senior Treatment Supervisors (STSs), DOTS (Directly Observed Treatment Short Course) Supervisors, DOTS Plus Supervisors, HIV-TB program coordinators and

Public-Private Partnership Management (PPM) coordinators.

• Medical Officers who were present during the visits.

• WHO consultants who were present during the state visits.

• TB survivors and TB activists; most of the TB activists were themselves TB survivors.

We also talked to chest physicians, TB experts, public health specialists, social scientists and re-

searchers to obtain a country perspective on gender and community issues in addition to gender

concerns related to TB and to the RNTCP.


In each state, we visited at least 2 districts and 2-3 District Tuberculosis Centers (DTC). We also

interviewed the STO (State TB Officer) and two or more DTOs (District TB Officer) and members of

their respective teams. In Odisha we visited one tribal and one coastal district; in Maharashtra one

urban center and one rural district; and in Delhi we visited the DTCs close to large slums, in order to

observe the interplay of gender with rural-urban locations, class and ethnicity.

We interviewed a total of 70 people including 28 women, 1 transgender representative and 41 men.

Among these were 7 senior health officials, 18 TB officials/managers, 7 TB survivors/activists, and 38

others from various categories. (Table 3) Details of the state-wise categories of interviews may be

found in Annexure 1. The table below presents a brief version here for ready review.

Table 3: Details of Interview Respondents

Interviewee Female Male Total

Clinician / Chest Physician/ TB Expert and Public Health Specialist

3 5 8

Field Functionary 3 11 14

Medical Officer 1 1

Civil Society Representative/NGO/ TB social project manager (including MDR TB)

3 1 4

Senior and other Health Officials/ Managers (STO, DTO etc) 6 19 25

Social Scientist /Researcher 5 2 7

TB/ MDR TB Counselor 1 1 2

TB Survivor / TB Activist and/or Touched by TB member 5 2 7

Transgender people’s representative (1 TG) 1

WHO Consultant to TB program 1 1

Grand Total 29 (1TG) 41 70

Challenges linked to the stakeholders reviewed: Lack of women staff in the RNTCP program

The overwhelming proportion of men employed in the RNTCP ensured that most of our interviews

were with male staff. Only one STO, two CTOs and one DTO among the respondents were women,

whereas 19 STO/DTOs and other health officials or managers interviewed were men. Even most

of the field staff who are expected to have a interface with TB patients are men. Of the 11 field

staff interviewed, all 8 belonging to RNTCP were men while the 3 women interviewees were ASHAs

(Accredited Social Health Activists), who are part of the NHM. There are more women only in the

categories of Social Scientists/Researchers and TB survivors/TB Activists where special effort was


made to ensure that women are represented. This is a telling observation on the sex-wise composition

of the RNTCP program.

A senior TB expert and public health specialist who was interviewed for the rapid assessment

commented that lack of women in the RNTCP is among one of its problems, one that prevented the

health system from knowing the life experiences and perspectives of women. He stated that not

more than 2 or 3 DTOs in any state are women and the others are all male. He observed that even

an Indian Medical Association (IMA) meeting is attended only by men.

FINDINGS OF THE RAPID ASSESSMENT


IV. Gender and Epidemiology of Tb in India

Gender bias in health has historically taken many forms. For example until recently women were being diagnosed with Angina and Myocardial Infarctions using diagnostic criteria devel-oped for men. Recently, it was brought to light that heart attacks may present very differently and in

a silent form among women. Many health research studies did not include female participants but

their results were used to treat female patients. Not using sex-disaggregated data for the analysis of

research studies is one of the many forms of gender biases in health.

4.1 incidence of Tb among women and girls

Globally more men are seen to be diagnosed with TB than women and the ratio is approximately

60:40 between men and women. More men die of TB globally, both as a proportion of total cases

and in absolute numbers. This has given TB the image of being a ‘men’s disease’. Even so, in absolute

numbers, the number of women with TB globally as well as in India is very high. Women and girls

account for 1 million TB cases in India each year. TB is also the fifth leading cause of death among

women in India. Therefore, in order to control and eventually eliminate the disease from India, it is

important to pay attention to the sex and age wise profile of the disease. This is also important for

the TB program to be able to tailor its strategies to the different presentations of TB in different age

and sex groups.

The reasons why the incidence of TB appears less among women could be because -

• Fewer women suffer from TB

• Fewer women are diagnosed with TB

• Women are unable to access health services for TB

• A combination of the above

Further, it is possible that women suffer less from TB because they are less exposed to the infec-

tion or because they are in some way protected from the disease. Similarly, fewer women being

diagnosed with TB could be due to providers not being able to diagnose TB among women on time

or because women approach the health facility late. A host of gender and social barriers, such as

access to finance and mobility is linked to women’s inability to access health services. Most of these


factors are amenable to social, human behavioral and environmental change. This is another impor-

tant reason to be alert to changes in age and sex-based incidence patterns of the disease, besides

geographical patterns and patterns among key populations. Uplekar, Rangan and others cite studies

which urge us to cross-check whether indeed incidence of TB among girls and women is as low as

is currently widely presumed i.e. about 40% of the total6. When TB was a formidable disease in the

industrialized world, higher levels were documented in young and early middle-aged women as

compared to men7. They also point to socio-cultural barriers that prevented women from accessing

services which were deemed unacceptable or which were expensive.

4.2 Epidemiological Picture of TB Based on Literature Review

Sex-disaggregated data regarding the incidence and prevalence of various forms of TB, as well as the

monitoring indicators used in the RNTCP, which would have clarified the sex-specific epidemiology

of TB in India, is available at the state and district level. However, it is not published for wider use

and does not appear to be used in designing the local program. Sex-disaggregated data is also not

available for cases found during active case finding (ACF). One senior health official told us, “We do

not think differently for men and women. For us they are all (a single) population.” When we asked

health officials about the age-sex linked trends in their states or districts, all of them told us that they

would have to look at the details of the data before answering, indicating a lack of familiarity with

age and sex-disaggregated data which they regularly collect.

Studies have documented that under the age of 20 years, the notification of TB among men and

women, boys and girls is similar (Mukherjee et al. 2012). After this age, the diagnosis of TB among

men steadily rises in comparison to women. On the other hand, in a four country study initiated by

WHO, a lower number of female TB patients were identified in India and Bangladesh as seen by the

case registries, but Malawi reported an equal number in both sexes and Columbia reported more

cases among females. Therefore, the reasons behind the gap in diagnosis between men and women

need to be further explored.

The RNTCP has historically focused on the sputum test to diagnose TB. The test is suited primarily

to diagnose sputum positive pulmonary TB which is most commonly found among men. The next

most commonly used criterion has been chest X-ray, which is again useful to diagnose pulmonary TB.

There is evidence to show that the presentation of TB among women may be substantially different

from men, making it difficult to diagnose TB in women. Various studies on incidence of TB in India

point to the higher incidence of sputum negative presentations of TB and extra-pulmonary TB (EPTB)

among women. A study undertaken in Chennai found a larger proportion of men than women had

sputum positive TB. The same study noted that a higher proportion of women than men suffered

from EPTB (16% in women and 5% among men)8.

6 Uplekar et al. 20017 Holmes, Hausler, and Nunn 19988 Balasubramanian et al. 2004.


In a WHO study, the proportion of women was higher among new sputum negative (NSN) patients

starting their treatment in India and Bangladesh, indicating a higher proportion of NSN TB cases

among women (Weiss et al. 2006).The same study recorded that men in India more frequently

reported signs such as blood in the sputum which is typically associated with TB by people as well as

clinicians and formed the ‘text-book picture’ of TB. On the other hand women presented with non-

specific findings such as fever, body ache, loss of appetite and fatigue. Greater delay in diagnosis by

health providers were also linked to non-specific physical signs of illness.9

Another study based on the utilization of RNTCP services found that women had a lower proportion

of sputum positive diagnosis compared to men10. Mukherjee and others also documented a higher

proportion of NSP cases among men (40%), followed by New Sputum Negative (NSN) cases (38%)

and New Extra Pulmonary (NEP)cases (8%), while for women the proportion was higher for NSN

cases (42%), followed by NSP (35%) and NEP cases (13%) which were relatively higher11. Women may

also have more atypical forms of the disease, such as six times higher number of cases of calvarial

Tuberculosis12, a rare form of bone TB.

Interviews with senior health officials indicated that where better diagnostic facilities are available,

such as in larger cities, the proportion of EPTB cases are on the rise.

Globally there is evidence that women in their early reproductive years may have faster progression

from TB infection to disease and higher mortality rates13 . Balasubramanian and others recorded

a higher progression of infection to disease among men, but when smokers and alcoholics were

removed from the data, the male:female ratio was 1.2 indicating the special vulnerability faced by

smokers. When smokers were omitted from the analysis, men and women faced similar progression

in TB disease.

4.3 Age and Sex-linked Incidence of TB from RNTCP Data

Age and sex disaggregated TB data are available at district and state levels and throw up interesting

findings which have implications for care and prevention strategies. The following are findings from

the analysis of state level data from Maharashtra from one quarter of 2016.

9 Weiss et al. 2006.10 The proportion of sputum positive diagnosis among women was 10.8% [95% CI 10.5%-11.1%] as compared to men who had 17%

[95% CI 16.7%-17.3%] (Dandona et al. 2004)11 Mukherjee et al. 2012 12 Jadhav and Palande (1999)13 Needham et al. 2001


Table 4: Maharashtra Data, 2016, Age and Sex wise New Sputum Positive (NSP) cases

Age GroupMaharashtra

% of FemalesMumbai

% of FemalesMale Female Total Male Female Total

0-14 234 576 810 71 43 130 173 75

15-24 5376 5075 10451 49 939 913 1852 49

25-34 6069 3924 9993 39 735 446 1181 38

35-44 5764 2471 8235 30 602 203 805 25

45-54 5106 1818 6924 26 475 165 640 26

55-64 3870 1517 5387 28 273 132 405 33

>65 3580 1361 4941 28 154 80 234 34

Total 29999 16742 46741 36 3221 2069 5290 39

The overall incidence of NSP cases among men (74%) is higher than women (36%) in Maharashtra

and in Mumbai where the proportions were 71% among men and 39% among women. However,

the age and sex-disaggregated data indicates that in the age group of 0 to 14 years, 71% of cases in

Maharashtra and 75% in Mumbai are found in girls. Though the numbers are smaller, this reversal of

the pattern is a consistent finding in the district records that we reviewed.

In the age group of 15-24 years, we found the number of NSP cases among males and females to be

nearly equal. 49% of women and girls in Maharashtra and Mumbai each had NSP TB. The numbers in

these categories are substantial. In fact, 15-24 year-olds account for the largest number of cases for

women in any age group. This suggests that women are most susceptible to TB in the age group of

15 to 24 years and the numbers are comparable to men. This finding is also consistently seen across

the districts.

The Mumbai district figures were selected for analysis because the overall TB numbers in Mumbai

are high. In some TB districts in Mumbai, we found that females in the age group of 0 to 14 years

as well as 15 to 24 years show a much higher incidence of TB compared with boys in the same age

groups. Some districts of Maharashtra also show a much higher incidence of TB in girls compared

to boys in this age group. On the other hand, some TB districts in Mumbai — Centenary, Govandi,

Kurla and Vikhroli, have comparable numbers of TB cases among men and women when aggregated

across age groups. (See Annexure 2)

New Sputum Negative and New Extra-Pulmonary Cases

Among New Sputum Negative cases (NSN), the total proportion of women affected in Maharashtra

is 41%, and is higher in Mumbai at 46%. Some TB districts in Mumbai have higher overall number of

NSN cases compared to men in the same age groups.


Women also have a higher incidence of NEP in both Maharashtra (52%) and Mumbai (58%). In some

districts of Maharashtra and TB districts of Mumbai, women far outnumber men in the NEP category.

Senior health officials said that the recently introduced diagnostic technologies such as CB-NAAT

(Cartridge-Based Nucleic Acid Amplification Test) have made it easier to diagnose EPTB cases as also

sputum negative cases. These cases would go have gone undetected earlier. More cases of EPTB

are being diagnosed in cities like Delhi and Mumbai where the new diagnostic facilities are widely

available. It is possible that TB among women is being better diagnosed now.

Table 5: TB cases in Maharashtra by category (2016)

Tb categories

Maharashtra

% of Females

Mumbai

% of FemalesMale Female Total Male Female Total

NSP 29999 16742 46741 36 3221 2069 5290 39

NSN 13742 9610 23352 41 2392 2053 4445 46

NEP 12144 13386 25530 52 2506 3480 5986 58

Doctor Level Delay in Diagnosis

A number of studies have pointed to patient level and doctor and health system level delays in TB

diagnosis14. These delays may be linked to the epidemiological picture of the disease and may affect

an early and accurate diagnosis of TB in women. There is a steady attrition of cases of presumptive

female TB patients from the time they reach a public facility; fewer women submitted their sputum

for testing and still fewer were found to be smear positive. Sputum negative TB and EPTB cannot

be diagnosed on sputum microscopy. Newer technologies of CBNAAT have been very recently

introduced and not available yet in many rural areas. Also our interviews with health officials

indicated that x-ray facilities, another avenue to diagnose NSP cases, are not always available at

the sub-district levels. The NHM is working with states to make these available. For example, an

interview with a woman from a tribal village of Odisha revealed that she got diagnosed with TB after

a year of repeatedly visiting public and private health facilities -- only when she became sputum

positive. During this delay, she had lost substantial weight and her mother was also diagnosed with

pulmonary tuberculosis, possibly due to close contact with her daughter.

4.4 TB during pregnancy and post-partum period

Prevalence of TB in pregnant women: In 2011, it was estimated that more than 200,000 pregnant

women suffered from Tuberculosis globally, a majority of these in the WHO African region and WHO

South East Asian region (67,500 cases). India ranked highest in the estimated number of pregnant

women with TB, with more than 44,000 cases and 21% of the global burden. This is on account of

high burden of TB in the country, a large population as well as relatively high crude birth rates15.

14 Dandona et al. 2004, Weiss et al. 200615 Sugarman et al. 2014


Another estimate of burden of TB among pregnant women was similar, i.e. 20,000 to 40,000 cases16.

Other smaller studies provide prevalence figures ranging from 19% to 34% among HIV-negative

women in India17.

Higher risk of TB in pregnancy and in the post-partum period: Mathad and Gupta (2012) draw

upon a growing body of research to make the case that physiological changes in pregnancy have

an impact on the epidemiology of TB. Pregnant women and women in post-partum period face

a higher risk of TB. Women in the early post-partum period are twice as likely to develop TB as

non-pregnant women18. Bates and others (2015) also highlight that immunological changes during

pregnancy make new infections as well as activation of latent infection more common among this

group. This research outweighs the earlier findings that pregnant women are only as much at risk

of TB as the general population. National Programs have yet to collect and report data on number

of pregnant women with TB and the lack of this data makes it difficult to get a clear national picture

of this burden19. Gupta et al (2007) also note that women who are HIV +ve face an even greater risk

of contracting TB in the post-partum period (incidence of about 5 cases per 100 person-years) as

borne out by research on Indian women. Gupta et al (2016) also found that TB, generally diagnosed

in the post-partum period, is also associated with increased mother-to-child transmission of HIV

(30% vs 12%). They recommend that steps should be taken for prevention of TB and treatment of

latent TB in HIV infected mothers, especially in communities where HIV/TB burden is high. However,

scientists, researchers and practitioners note that despite substantial prevalence and mortality for

TB among women in the reproductive years, there is very little research or understanding about the

epidemiology and presentation of TB in pregnancy and post-partum period. On the other hand, a

substantial proportion of these women may never get an early diagnosis of TB, which can markedly

reduce health risks to mothers and new borns.

Difficulty in diagnosing TB in pregnancy: Several researchers record the difficulty of diagnosing

TB in pregnancy. This is because TB in pregnant women may present with non-specific symptoms

such as malaise, loss of appetite, breathlessness and sweating which may be mistaken for common

symptoms in pregnancy and not with fever, haemoptysis and night sweats typically seen in men20.

Secondly, even when women have symptoms, doctors may be reluctant to ask for a chest X-ray in

pregnant women due to the potential risk to the fetus. Besides, access to diagnostic facilities such

as X-ray, FNAC (Fine Needle Aspiration Cytology), CBNAAT etc., is limited, especially in rural and

tribal areas. Additional problems faced by HIV+ve women is that sputum tests are less sensitive and

sputum culture requires considerable time to yield results, thus delaying diagnosis. Diagnosis of

extra-pulmonary TB poses even greater challenges as the signs of TB may be masked. For example,

weight loss of TB is masked due to weight gain of pregnancy. It may be far more difficult to undertake

16 Jana Narayan et al. 201217 Mathad and Gupta 2012. 18 Gupta et al 201619 Ibid20 Long, Diwan, and Winkvist 2002.


a surgical or endoscopic biopsy or use other methods to get a sample in pregnant women due to

obvious risks of the procedure itself or associated anesthesia, risk to the fetus and difficulty of

accessing the affected tissue, for example, in abdominal TB. Diagnosis is therefore considerably

delayed. Pregnant women who are diagnosed late or treated late for TB, especially in the third

trimester, face poorer outcomes for themselves as well as their infants. On the other hand, Sugarman

and others (2014) have estimated that nearly 53% and 55% of the estimated TB in pregnant women

may be diagnosed with X-rays and CBNAAT technology respectively delivered through maternal care

services.

Impact of TB and HIV-TB co-infection in pregnancy

Increased maternal mortality due to TB in Pregnancy and Post-Partum period: Tuberculosis is one

of the leading non-obstetric causes of maternal mortality in low-income countries. Evidence suggests

that untreated TB in pregnant women may result in 40% maternal mortality. Active tuberculosis

disease in HIV positive women can increase the risk of maternal mortality by 300%21. In India, though

evidence is sparse, one study based on causes of death found in post-mortem (autopsy) reviews of

maternal deaths reported a more than 9% maternal mortality (26 among 227 deaths) on account

of Tuberculosis22. Among these four women had tubercular meningitis and four had tubercular

peritonitis. Co-infection with TB in HIV +ve women substantially increases maternal deaths by more

than 2 times and infant deaths by about 3 and ½ times in this group23. Better reporting of causes

of maternal deaths and better implementation of maternal death reviews can build more robust

evidence on the subject.

Most deaths in HIV-TB co-infected women were on account of TB and not due to obstetric

complications. A study of pregnancy outcomes among TB-HIV co-infected and HIV infected women,

found that of the 17 co-infected pregnant women only seven (41%) were alive and on ART; seven

(41%) had died, and three (18%) were lost to follow-up. On the other hand women who only had HIV

and were taking ART, showed better outcomes with 71% alive and on treatment24.

Adverse impact on fetus and infants: Jana Narayan and others (2012) as well as Mathad and Gupta

(2012) note that both TB and HIV-TB co-infection in mothers add to pregnancy related complications

and also have an adverse impact on the fetus and infant. TB in pregnancy increases hospitalizations

during pregnancy, increases incidence of pre-term births, miscarriage and causes other complications.

Infants born to women with TB as well as HIV-TB co-infection face increased chances of fetal distress

during delivery, generally weigh lower at birth, are small-for-date25, may be born premature and

experience increased mortality within the perinatal period as well as the first year. There is also the

possibility of TB being passed on to the child both in the womb and through air-borne droplets in the

21 Zumla, Bates, and Mwaba 2014.22 Panchabhai et al. 200923 Gupta et al 2007; Maternal deaths increases 2.2 fold; 95%CI 0.6–3.8 and infant deaths 3.4 fold; 95%CI 1.22–10.59. 24 Suresh et al. 201625 Weight less and are overall smaller than expected for gestational age. These babies are generally not pre-term but small for age.


immediate post-partum period. Again, diagnosis of TB in infants is challenging, thereby increasing

the chances of a missed diagnosis in the infant. Increased and early diagnosis of TB among pregnant

women can reduce many of these complications and improve outcomes for both mother and child.

TB in pregnancy rooted in social determinants: Other important findings from the study by Suresh

and others were that TB-HIV co-infected pregnant women with poor delivery outcomes had

significantly lower initial weights and lived greater distances from the nearest health facility, thus

underlining the importance of factors such as nutrition and better access to health services26. Jana

Narayan et al (2012) also note that the TB in pregnancy is closely tied to poverty, under-nutrition,

anemia, over-crowding and multiple births in women and not merely biological or immunological

susceptibility. They also note that many women may be too unwell at times to attend either the ANC

clinic or the DOTS centre, thus also increasing interrupted treatment and worsening the outcome.

The toll on the family by way of expenses, lost wages, transportation and emotional toll is high.

Interactions of gender and TB in pregnancy gleaned from our field experiences: Two senior doctors

having significant experience with TB told us that during pregnancy and the post-partum period

the need for calories and proteins in the body increases, therefore it is not surprising that women

become more vulnerable to TB in this period. One senior scientist mentioned that she had seen

many pregnant and post-partum women with TB in maternity wards in tribal areas. At least two case

studies narrated spontaneously to me were about women who contracted TB immediately after

child-birth. The TB in both women was initially MDR-TB and subsequent diagnosis was of XDR-TB.

A senior physician who practices in tribal areas told us that newly married women who are on TB

treatment and who are responding well, often feel the pressure to start a family. Counselling to delay

pregnancy until the TB treatment is complete, is rarely considered. As soon as the family comes to

know that the woman is pregnant, both she and her family do not want her to continue the treatment

for fear of medicines affecting the unborn foetus. Relapses are common in this situation and some

women come back with DR-TB. That Rifampicin, one of the primary drugs used in TB treatment also

interferes with oral contraceptives, makes the task of the health care provider tougher.

Narayan and others reiterate that incomplete and irregular treatment is a common problem in

pregnant women. To overcome this challenge, they recommend that impediments at three levels

will need to be addressed namely, at the level of the health system, at social and family level and at

personal levels27.

Health System Issues linked to TB in pregnancy

Better integration of RNTCP with the RCH programme: The unique challenge of diagnosing TB in

pregnancy and the inadequate availability of diagnostic tests pose a difficulty for the health system.

In addition, pregnant women find it difficult to attend ANCs as well as the DOTS centres28. The

26 Suresh et al. 201627 Jana Narayan et al. 2012 28 Jana Narayan et al. 2012


need is for the RNTCP to be better integrated with the Reproductive and Child Health program,

especially maternity services. More needs to be done to screen pregnant women for TB and prevent

transmission to the infant as compared to preventing the parent to child transmission of HIV.29

Mathad and Gupta (2012) point out that there is inadequate evidence of the cost-efficacy of routine

screening for TB among pregnant women. TB symptoms are generally commonly found --even in the

absence of TB-- leading to unnecessary tests for TB. They recommend better research to gene

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GendeR And TubeRculosis - Stop TB Gender...They also organised the various interviews required and gave me a free hand in writing the report. I also received valuable feedback on the